Last week I was speaking with a coworker who had seen Helena going outside to play. On her way out, Helena fell down. She told me, “My instinct was to go over to see if she needed help, but before I had time to react, she had already pulled herself up and was moving on.”

Helena looks very vulnerable, and it is natural to want to offer help – but when she falls, she almost always pulls herself up quickly. She doesn’t usually leave much time to help!

Falling is one of the most common challenges Helena deals with on a daily basis. Sometimes, she will ask for help and it is very much appreciated. And at the end of a school day, she is exhausted and help is usually necessary. More often than not, however, she prefers to be left alone to do it herself.

We all want to be cared for from time to time – but no one wants to have to depend on others to be successful. Helena is a very typical strong willed child. She wants to do things for herself. She wants independence.

Whenever Helena falls, she will often reassure those around her – “I’m okay, I’m okay.” And then, she quickly moves on to her next adventure.

Once, Helena was walking hurriedly down a sidewalk, dragging her walker behind her. She hit an uneven seam in the sidewalk. The walker stayed still, but her body hurled forward, causing her to fall. “I’m okay, I’m okay.” She turned her body, pulled up on her walker, and was hurriedly walking again. This happens frequently.

On another occasion we were in Walmart. Helena was in her wheelchair, but then decided that rather than riding, she wanted to push the chair. Although we were slowly plodding through the store, she pushed the chair just a little too fast, lost her balance, and fell. People around her were a bit alarmed when they saw her go down. “I’m okay, I’m okay,” she said – she pulled up on the chair- and off she went, pushing the chair once again.

Although most people are not accustomed to seeing her do this, Helena frequently crawls or drags herself places when she is not wearing braces. When she does this, she sometimes gets splinters. She will mention a splinter, or we might notice them and ask to see them. She always loves to attend to others’ injuries or ailments, but does not want us to attend to hers at all. If we ask to see her splinter, she will shake her head no and protest our efforts. “I’m okay, I’m okay.” And so we have to wait until she goes to sleep to take it out. .

When Helena was in the hospital, she was in some excruciating pain when the casts started really stretching her legs. She hated being stuck in bed, hated having to get her vital signs taken, and was very sensitive to moments when she felt her independence was removed against her will. She would scream and cry, clutching tightly onto me, and was unable to be distracted from her pain. Clearly she needed pain medicine, so we would call the nurses to bring some to her. When the nurses arrived, she would vigorously fight getting medicine and wail, “I’m okay, I’m okay.”

Helena has demonstrated from a very early age her desire for independence. Her body may not always cooperate like most, but she is ferociously determined to do things by herself.

We are usually very accommodating of her efforts – she is going to have to advocate for herself one day and needs to be independent in every way she can. However, some of our most trying moments as parents involve Helena’s desire to do things independently that we feel may be inappropriate for her safety.

Allowing for Helena’s independence also means slowing down and allowing her to make mistakes (which can be very inconvenient if you are in a rush). To make her strong means sometimes allowing her to fall- and accepting that sometimes I have to slow down.

Here, I have a confession to make: I do not like slowing down. Slowing down has meant I have to let go of some things- my perfectionism, prompt arrivals, hobbies – even a career change and enjoyment of many of my kids’ activities (who are amazingly supportive and know Of my undying support for their passions). I am sometimes sad about missing these things – but truly – I am so blessed to have the chance to be there for her!

Helena doesn’t move as well as most of us, but she maximizes her potential by constantly striving to achieve goals of physical endurance – walking through the store, climbing up to the top of the slide, riding a tricycle, and trying to climb stairs. She works harder at day-to-day mobility than most of us work at maintaining our bodies through exercise. She is truly fierce.

AMCers are rare, but nearly every one I have encountered tends to be just as independent as Helena.

Consider the words of one of my AMC friends, a motorcycle-riding grandmother with similar contractures to Helena’s – and a fiercely independent role model:

“Society tells us we are a victim when something happens to us. That, in turn, “frees” us from taking control of the situation. We need to be survivors. Survivor’s take control and go on with their life.
Words do make a difference in how we see things. By changing one word a “victim” can become a survivor.”

Helena lives every day as a “survivor.” She does not allow the circumstances of her physical body to determine her fate. She also seems to understand, even at her young age – that she can draw upon God’s strength to reach goals that others may think impossible. As a result, she pushes forward.

Although her limitations are more visible, she is behaving exactly as I would expect any of my kids to respond. If you fall – pick yourself up. If you fail, you try again – and you find a way to survive. Helena is very lucky to have learned this lesson so young. And I’m thankful to have been able to slow down long enough to enjoy it.